THERAPEUTIC ITINERARIES OF PATIENTS WITH RARE DISEASES: INTEGRATIVE REVIEW

• Autor(a) principal: Lima da Silva, Hidário
• Data de Publicação: 2023
• Outros Autores: Cassandra Costa Maia Dias, Ismália, Gomes Nogueira Ferreira, Adriana, Fernandes Pereira, Ana Lúcia, Pereira Dutra, Richard, Santos Neto, Marcelino
• Tipo de documento: Artigo
• Idioma: por
• Título da fonte: Revista Enfermagem Atual In Derme
• Texto Completo: https://revistaenfermagematual.com/index.php/revista/article/view/1662
• topic: Doenças raras; Itinerário Terapêutico; Brasil; Rare diseases; Therapeutic itinerary; Brazil; Enfermedades raras; Itinerario terapéutico; Brasil

Objective: To know through scientific literature the therapeutic itineraries of patients with rare diseases in Brazil. Material and Methods: Integrative literature review study conducted in June 2022 in the SciELO library and in the SCOPUS, Web of Science, PUBMED and Embase databases. The following descriptors were used: "rare diseases", "orphan diseases", "therapeutic itinerary", "therapeutic journey", "paths traveled", and "therapeutic trajectory", applying the Boolean operators "AND" and "OR".  The inclusion criteria were articles available in full in Portuguese and English. Exclusion criteria were duplicate articles, reviews (systematic, narrative and integrative), opinion articles and editorials. Bardin Content Analysis technique was used. Results: Six articles were incorporated. The categories contemplated the therapeutic itineraries of patients with rare diseases since the search for diagnosis, access to specialized services, as well as the legal reflection of the Policy for Comprehensive Care of People with Rare Diseases. Final considerations: Patients with rare diseases present different therapeutic itineraries, although most face difficulties in diagnosis and maintenance of treatment. Despite the creation of the National Policy for the Comprehensive Care of People with Rare Diseases, families and patients still face long journeys in the search for health care, especially when it comes to diagnosis and access to specialized services for rare diseases.